"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:38-39 NIV
About Me
I’m just a Mama who has learned how to cope while raising a child with Ehlers Danlos Syndrome Hypermobility. My faith in God alone has sustained me and I wanted to share that hope with other moms who are traveling this very difficult, lonely road. This is also a place where I am attempting to heal and find myself again. I love to garden, spend time with friends, and encourage other women. I have a God who loves me deeply, a husband who balances me, four beautiful children, a daughter in love, and now two sons in love who all teach me more about myself, and dear friends who make my life more bearable. God has never failed me and He sees all that you endure, too. It is my prayer that you find this to be a place where you can stop by regularly and rest a while, Mama.
Our Complete Story...
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Please God, Take My Baby - By Shannon L. McKenzie This is the true account from a mother's perspective of the long journey to a medical diagnosis of Ehlers Danlos Syndrome. You'll hear honesty, grief, tears, humor, faith, and HOPE woven throughout the pages. It is sure to encourage any caregiver, chronic illness patient, or anyone who is discouraged with a difficult trial. Click on the picture for more information. |
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Our Story
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My daughter is 28 years old now. Our journey started actually at birth since EDS is genetic, however we were basically unaware of any problems until 2004 when she was in fifth grade. At that age, she started to suffer from stomach pain and after many tests and several doctors, we learned she had GERD or gastroesophageal reflux disease. Things continued to deteriorate through middle school and into high school with episodes that looked like seizures, severe widespread pain, difficulty walking, and trouble with eating and drinking. Her gastroenterologist diagnosed her with gastroparesis, which means paralysis of the stomach. Food is delayed in leaving the stomach. She was too sick to attend much of middle school and high school. It was a nightmare we were living and nobody could fully diagnose her with any underlying condition which would explain all her symptoms. I felt very alone, like God had completely forsaken me. It was difficult to focus on my three other children and my own life. My days were filled with doctor visits and caring for her basic needs. After about eight years and a trip out of state with our severely debilitated daughter in a wheelchair, a cardiologist finally diagnosed her with Ehlers Danlos Syndrome Hypermobility and secondary Dysautonomia, both of which have no cure yet.
This is not the life I chose, but it is the life God had planned for us. God is still healing my heart and mind from the trauma of what our family lived through. He showed me that He is faithful even when I was not. He has shown me that He uses illness to point others to Himself and that He is still God even when He chooses not to heal completely in this lifetime. |
What are EDS and Dysautonomia?
There are many types of Ehlers Danlos Syndrome but the focus here is Type 3 or the Hypermobility form. EDS is a genetic condition which means a person is born with it. The collagen or glue that holds the entire body together is faulty. Collagen is a connective tissue protein that appears in all body organs, bones, and even blood vessels. A person with EDS exerts tremendous energy just trying to hold their body together. Joints are hypermobile or move beyond their normal range of motion which can be injured easily. Skin and body tissues are delicate and bruise easily. The patient likely suffers from fatigue and severe pain in the joints, muscles, and may even have nerve pain and central pain disorder. Dysautonomia is a malfunction in the autonomic nervous system. In our daughter's case, it is a direct result from her EDS. See, EDS causes lax blood vessels which have a hard time pumping blood back to the heart. This causes the heart to start beating faster in an effort to compensate. The autonomic nervous system controls many things we do not normally think about such as breathing, blood pressure, digestion, and temperature control. Dysautonomia can be a minor nuisance or can wreak havoc on multiple body systems due to nerve involvement making daily living difficult.
Please feel comfortable leaving a comment. Your stories encourage me and others as well. Be assured I pray for you and your loved one as comments are left and I continue to keep you in my prayers. Are you in need of a little encouragement? Reach out and do not feel you must walk this alone!
I am not a doctor and information on this blog is not to be taken as medical advice. Please consult your doctor for appropriate care.
Please feel comfortable leaving a comment. Your stories encourage me and others as well. Be assured I pray for you and your loved one as comments are left and I continue to keep you in my prayers. Are you in need of a little encouragement? Reach out and do not feel you must walk this alone!
I am not a doctor and information on this blog is not to be taken as medical advice. Please consult your doctor for appropriate care.